We Are Having a Great Time!

I hope that everyone has a great sense of humor about Mike's April Fools joke! He really has an active imagination! We are all doing great. We are having a family outing in Seattle. We went to the Aquarium today. Kelby liked the fishies and the otters. Mostly, she really loved to walk up and down the stairs there. We'll post some pictures tomorrow after we get home. After the Aquarium, we went to our hotel...which is super dooper nice...a 2 room suite. After a little nap we went to Chuck E. Cheese for dinner! Kelby got to eat pizza and watch the robot guys sing. She really had a great time I think. We are just having a relaxing, easy-going time. Tomorrow we'll head to the pool in the morning and then to the Seattle Pacific Science Center.

March is Almost Gone

I can't believe that it is the end of March already. It feels like just yesterday it was the beginning of the month. I just wanted to let you all know that the doctors came together yesterday and made some decisions. It sounds like her surgery will be April 11. We'll be admitted on the 10th for pre-op stuff. They won't be doing the biopsy. That is so great. It would have been much harder on her to have both done. Then, she will be going into the stem cell transplant after she completely recovers from the surgery...about 2 weeks later. We wish that the surgery could be next week instead of the week after, but I am sure that they did what they could to get her in. We thoroughly enjoy having her at home so healthy and happy! We just worry that too long without treatment might give the cancer a chance to start growing again. She really doesn't have that much cancer (if any) left in her, so it isn't too big of a worry I think. She is in "successful remission"! So, my guess is that the transplant process will start around the 25th of April. She'll still be recovering when the new baby is due, but she should really be feeling better by that time....hopefully. I think that if we take everything in stride...it will be fine. There's no need to worry about it now. We are so thankful that Kelby is doing so well! We know that God is here with us through every step of this and He is in control. We'll post some pictures after our fun outing this weekend. Love to you all!

Still No Definate Schedule

Well, the last two days were quite busy. Kelby had a new CT and bone scan done on Tuesday and yesterday we met with the doctors to talk about the plan. The scans went great. Kelby was a really good girl. The hardest part was getting her to drink the contrast that they give her for the CT scan. She only got half of it down the regular way, so they had to put the tube down her nose into her stomach. That didn't make her happy, but once they took that out she was ready to sleep. The sedated her for the scans so she would lie perfectly still. She woke up very happy and ready to eat! She munched down a ton of cheese and a piece of pizza right away. Tuesday evening we took Mom and Brad to the airport and they headed back home. It was nice that they got to see Kelby so happy and healthy! On Tuesday night a bunch of wonderful ladies did a wonderful thing for me. I just wanted to say thank you to every single one of them! They surprised me with a special "ladies night out" of crafting and fellowship. I thought that I was going to a MOPS planning meeting, but instead a bunch of friends came together to work on a cool craft and they gave me a special gift as well. I don't have enough words of thanks to express how I feel. I managed not to cry over their generosity until I got home. I don't deserve their kindness, but I appreciate it with all my heart. I have a wonderful church and wonderful friends! Wednesday we went down to meet with the doctors about Kelby's scans and to figure out what the next steps will be. We didn't leave with much more information than we came with. It sounds like the doctors all need to get together and make some decisions. I think that will get done right away now. We first met with the surgeon. He explained what the surgery and recovery will be like. We also met with an ENT doctor who might do the biopsy of her jaw bone. They still aren't sure where we will be for the surgery or when it will be. They still have to decide whether or not to even do the biopsy on her jaw. It really revolves around Dr. Park at Children's who is in charge of the stem cell transplant. We'll let everyone know more once we know more. Otherwise, Kelby is doing soooo well. She is her normal self...except that bald head. We are enjoying her so much. My dad came in to town yesterday too, so he gets a chance to enjoy her while she is healthy too! Things are going great and we are acting like a normal family right now. We are even going to take this weekend to either go camping or to stay overnight in Seattle and go do a ton of fun things. In Seattle there is the Pacific Science Center that has a live butterfly exhibit and a bubble exhibit, so we know that Kelby will LOVE it! Thanks for all your prayers!

Getting Chubby

We are all doing wonderfully! Kelby is eating like a little piggy. We are having a good time with my brother and mom visiting. My mom said that she doesn't think that Kelby has quit eating since she got here. I can see the difference in her face. She is getting her little cheeks back. She'll be in really good shape when she goes in for her surgery. Here are a couple cute pictures to tide everyone over. Thanks again for all your prayers! God Bless.

Doing Great!!!!

I am sorry that I haven't written a while. Things have just been so good. Kelby is eating more and more everyday. She is getting outside a little and having a good time. We have scans scheduled for Tuesday the 27th in the morning. Then, they will schedule surgery after they get the results from the scans. That will probably be the first week of April. But the best part is that she gets all this time before the surgery to recover and get stronger! It is nice to have this time that is so normal. We were having to give her an antibiotic every 6 hours through a syringe and that made us all miserable...not to mention not knowing how much medicine she was actually getting since she spit most of it out. So, yesterday I asked for the pill form and that is sooo much easier. She only has to have that every 12 hours, so she can sleep through the night now...and we can too! Plus, getting her to swallow the pill isn't as hard as the syringe of yucky goop. We tried to get cute pictures yesterday out in the daffodils, but our camera was on the wrong setting. So, we'll have to try again to get you all some more cute pictures! Anyways, know that everything is going really well and we are very happy to be home and healthy.

On To Surgery

Well, we had a really good meeting with Dr. Park today. We really liked her a lot. She gave us a lot of information about the actual transplant. The only bad thing was that as we drove up into the parking lot of the hospital, I broke down. The memories of the last time we were there at the Children's Hospital was just too much for me. The last time we were there was when we first found out about Kelby's cancer. I did pull it together quickly though and I was fine. Here's what it sounds like the next steps will be: First, hopefully sometime this week we'll go down to get some more scans...one more bone scan and a head and abdomen CT scan. Then, hopefully we'll get surgery scheduled for next week sometime. During the surgery they will be taking out the adrenal gland tumor in her belly. They will probably also do a biopsy on her jaw again as well as a bone marrow biopsy. For the bone marrow biopsy they will use a needle to get the marrow out of her hips. She's had that done 2 times before and it isn't ever a problem. For the jaw, I imagine it will be a bit more invasive like the first time she had it done, but it sounds like an important thing for them to do. If they find active cancer cells in the jaw tumor there will probably be another round of chemotherapy after the surgery before the transplant. Also, they will give her radiation to the jaw after the transplant. If they don't find active cancer cells in the jaw, we'll go on to the stem cell transplant two weeks or so after the surgery and she may not have to have the radiation to the jaw. We will probably be at Children's Hospital for the surgery. So after the surgery there will either be another round of chemo or the stem cell transplant. The actual stem cell transplant process was also explained to us today too. This will also be done at Children's Hospital. She will be getting three new chemotherapy drugs over a six day period. On the seventh day she gets to rest. On day eight they hook her up to her saved stem cells and give them back to her through her catheter. This chemotherapy is a step higher in intensity above what she has already been getting and thus so are the side effects. Her blood counts will all go down and stay down for longer. She will have to get more transfusions. With her white count so low, she'll be at risk for infection again, but for longer. That is why we'll have to stay at the hospital the whole time that she is recovering. Dr. Park also said that she will also have mucusitis as well...which is blisters in her mouth, throat, and stomach. That is because these drugs also break down the lining in those places. She hasn't had a problem with this at all so far, so hopefully she'll make it through without to much of a problem from that. So, as her the stem cells graph back into her bone marrow and her blood counts come back up, she'll start to get better. She said that we will be at the hospital for about a month. All of this sounds yucky, but it will be the last bunch of chemo she'll have to get and we are happy with that! The only major thing after the transplant is the radiation therapy she'll get. She'll also take six months of acutane which is for maintenance, but that is all out-patient. So, we are getting close to the end! If she doesn't have to have the round of chemo after surgery, she'll probably start the transplant chemotherapy in the middle of April. Then, she'll be pretty much recovered by mid-May...before the baby is even due! If she has to have the additional round of chemo, the transplant would start at the beginning of May and we would be at the hospital in recovery when the baby is due. So, we are praying for many reasons that they find she is ready for the transplant right away! Dr. Park wanted to reassure us that Kelby is doing wonderfully throughout her protocol compared to other kids that have been through it. Some kids have to start the IV nutrition right away in the beginning and it is amazing that she has held out this long. Other kids also suffer a lot of other side effects during the chemo that she hasn't. Plus, Kelby's tumor's response was really impressive to her. It was a really good, informative meeting. We are happy that surgery is next. I am ready for things to come to a conclusion now. It is also good that we have more of an idea what is going to happen next. Here's some cute pictures of Kelby for you all to enjoy.

Hanging In

We are just hanging in here. We have discovered that Kelby's antibiotics make her a little bit sick. She threw up from them yesterday, but seems to be keeping them down today. We mixed it with chocolate syrup and that seemed to help. She is happy to be home too! She is getting back into eating. Today she just had to have "corn". She is very selective with her foods. Otherwise, I am just enjoying being at my own home! I think I'll go take a nice hot bath. This is just a short update...but it is nice that nothing is happening! Love to you all!

Back to Normal

Well, Kelby is about 100% today. She is so happy and ready to be out of here! They tried to taper her off the IV nutrition more slowly today, but her glucose level still crashed...not as bad as yesterday. So, the doctor said that we either had to stay here and go back to an 18 hour regimen over the weekend, put a feeding tube down her nose, or go home with out the artificial feeding. They told us yesterday that the "good old-fashioned" way of eating was really the best for her, so we decided we'll take her home today and get her back to eating her eggs, waffles, cheese, and milk. She has already started eating regular food again, so we know that she is back to feeling normal. Once we get home she'll be eating like a piggy again. She just had to get over those low blood counts and the getting sick. She has gained one and a third pounds in five days, so I think that means she is pretty good an caught up. If we have to come back in for another round of chemo, we'll just have them start the IV nutrition right then to be proactive about it. We have a meeting on Monday afternoon to go meet with the doctor that will be in charge of Kelby's stem cell transplant. We'll have to go over to Children's to meet with her(Dr. Julie Park). We are hoping to find out when they will do it and get more information about the actual process. Our doctors here at Eastside really think that she is ready to have the surgery and the transplant now. They think Dr. Park will want to do another round of chemotherapy first. So, we have to get this straightened out so we can figure out what to do. Before this last round of chemo, they did a very expensive test that found 2 in a million cancer cells in her bone marrow. Our doctors think that is very little, so she should be considered in full remission...and that was before this last round. But it all depends on what Dr. Park thinks. They want her to be in as much remission as possible before the stem cell transplant without risking waiting too long and giving the cancer a chance to get immune to the chemotherapy. We'll let you know what we find out at the meeting on Monday. So, we are happy to be going home today. Kelby really wants to see the butterflies that I painted in her room. She seems to be really into butterflies now. Yeah!

Beware the Ides of March

Well, we had bad luck this morning. We don't get to go home tonight. After they took Kelby off her 12 hour dose of the IV nutrition, her blood sugar was too low. I guess what happens is the little body gets used to producing insulin to process all that sugar and keeps doing so even after they take her of the IV. So, that insulin uses up all the rest of the sugar that is her in system. So, we have to try it again tonight and see if they can taper it off better in the morning to help her little system handle it. Hopefully it will work and she can go home tomorrow. I think that I'll stay here with her tonight again. I have been sleeping really well, so I handle being here much better. Maybe we can at least get out of the room today because her white blood levels are up. They also discovered that she has an extra amount of bacteria in her colon that is making her have diarria. They will give us some antibiotics to help. I am glad that they figured out what the problem was. Kelby is looking and acting much better though. She has so much color in her skin and is much happier. She is starting to get back to normal. We are all hanging in here. I just have to be home by Saturday though so I can make corned beef and cabbage for St. Patrick's Day!

Gaining Ground

Wednesday March 14, 2001 I waited to do an update today so I might tell you more of what is going on...but I have waited and I still don't know what is going on. They are giving Kelby transfusions this afternoon. She is handling the IV nutrition well. They have been giving it to her over 18 hours, but they are going to get down to 12 hours tonight. Then, we'll probably be able to get out of here early tomorrow morning after she is done with tonight's dose. I hope to talk to our doctor later today and see what the next steps will be for Kelby. I hope that we can go straight to surgery and not have anymore rounds of chemo. We have had an easy day today. We both just relaxed. I hope we can sleep as good tonight as last night! It sure makes a difference that I have a bed to sleep in! Anyways, things are really getting better. Kelby is able to be happy when she is awake. She still sleeps a lot, but she usually does until her white blood cell count starts going back up. I predict that it will be up tomorrow. Plus, she is getting more red blood now, so that will help her energy level too. Until then we'll keep watching "Olie" and "Vegies" over and over and over again!

Great News!!

Well, we heard back on the MIBG scan that she had last week. Kelby's scan was really good. They said that there is no cancer in her leg or hip at all. I think that the doctor also was saying that the tumor in her adrenal gland is also dead. The tumor in her jaw was hard to tell, but the radiologist thinks that there is no active cancer there either. This means that she is much more a candidate for the stem cell transplant. I don't know if that means we will get to do it sooner or not, but it sure was good news! We might be able to do the surgery next rather than another round of chemo, but they haven't decided yet. Right now they are just focusing in on getting her little body "beefed" back up and getting her blood counts back up. They want to get her prepared for surgery. We are just super glad that there is less cancer spots in her body! Thank you Lord! I got to go home last night and get a good nights sleep. That was a really good thing because it sounds like Mike didn't get to sleep much last night here at the hospital. They started her IV nutrition at 2:00 in the morning and whenever they do anything new it is a lot of watching and checking that keeps them up. Maybe tonight will be better. I am running on full now though, so I'll be able to handle it. I got Kelby's room finished. Mike had painted it yellow a while back and I just stamped pretty butterflies in a border at the top. It is so exciting to have it done. My next project is a bright butterfly quilt for her bed. It is nice to have projects to work on. Mike is on his way home now. Kelby is doing good. She is content to watch "Rollie Polie Olie" again. She seems a little more perky. They finally got her potassium up to par, and with the IV nutrition she should kick back quickly. Her counts are still going down, but they should turn around again soon too. Then in no time we'll see that happy healthy baby again. I love those happy times! Thanks again for so much praying. We know it helps!

IV Nutrition

We didn't get too much sleep last night, so I think I'll keep this short for now and take a nap. She got her red blood at about 2:00 am. I thought that she'd feel more chipper when she woke up, but she still isn't too energetic. She is exhausted actually. She did eat some oatmeal this morning that she kept down. Her doctor is going to start her on IV nutrition tonight. It goes in through her line over night. Once they get her used to that and have watched her here for about 3 more days, we'll be able to go back home. Then we'll give her the IV nutrition ourselves there. I am sure they will have to train us on that. She won't have to be tethered to badly because the nutrition goes in over night. She sleeps for 12 straight hours, so she'll be able to get 12 hours of nutrition and then be unhooked during the day. The doctor said that little ones need enough food to sustain them daily, plus extra for growth, and in Kelby's case, she needs extra to catch up as well. So even if she did start to eat normally again on her own, she wouldn't be able to take in enough to catch her back up. They say that she'll still be able to eat regular foods too and that will be a bonus. Maybe she'll gain back some weight this way. We'll be here at the hospital now for another 3 days. I don't mind because I know that it is what is best for Kelby. I think that Michael will be able to free me tonight and that will help me out a ton! She also tested a little low on potassium today, so they gave her some extras of that in her fluids. I guess that low potassium can be bad on the heart, so they did an EKG on her awhile ago. She wasn't happy about them messing with her. She just wants to go "Ni-night". Everything seems to be fine with her heart though. We take this all in stride as best as we can. Thanks for all the prayers! We appreciate every one. Love you all!

Mommy Worries

Kelby still wasn't doing too good today. She has really been sleeping mostly the last two days. She hadn't really had much for wet diapers either so I started to get worried that she was dehydrated. I called Kelby's oncologist, and he had me take her into the local hospital to get her some fluids. They took her blood and found that her blood counts were really too low for comfort, so they had us come down to the hospital in Redmond again. They will give her a transfusion later tonight. She had lost 2 1/2 pounds since the beginning of that last round of chemo. I think that the fluids will really help. We are excited to get that blood transfusion too because it helps her feel so much better. That blood helps almost immediately. (So, if you can give blood, please do...we understand what a wonderful thing that blood is now!) I hope that she is on the mend in a major way tomorrow. Hopefully we won't have to stay tomorrow night too. She seems to be in good spirits though...she just doesn't have enough energy to do much. These are the days that are hardest, but we are all tough...especially Kelby. Love you all. Thanks for all the great guestbook messages!

Guess Who Was Throwing Up Now

Well, yesterday was interesting to say the least. I woke up in the middle of the night extremely sick. At first we were worried that I was somehow being affected by Kelby's chemo drugs, but all the docs assured us that this could not be. I was worth nothing for the whole day and hardly anything today. Mike's mom came over and helped Michael take care of Kelby...he was exhausted after being up with me all night. I'll spare you the details, but I don't remember ever being that sick before. I guess it was the flu or some kind of food poisening. I just hope that Kelby doesn't get it. Maybe it was good that I wasn't allowed to hold her the day before! I am feeling much better today...just a little tired out over all. Mike and Debbie took Kelby down for her scan today and it sounds like everything went fairly well. Kelby took everything in stride and was in a really good mood on her way home. We haven't gotten her to eat too much, but she is really drinking a lot! Her blood counts are already on their way up! It is just so amazing. This kind of chemo is hard on her stomach, but not so bad on her blood counts I guess. This means we won't have to go down to the hospital for a fever. Yeah! So, now we'll just be working on getting her to eat more. So, all is well in the Wright house once again. We won't know anything on the results of her scan for awhile I think. Here is Kelby eating grapes and watching her favorite TV show "Rollie Polie Olie".

Still Getting Sick

Last night we were up at 3:00 am with a sick baby. She didn't do too great yesterday, but did much better today. She made it through the whole day until 7:00 tonight before she got sick again. She has been drinking plenty of fluids, so we aren't too worried about her. Hopefully she'll all better by tomorrow. Today we went down to Seattle to get the radioactive injection for the scan that comes on Friday. I almost took Kelby down all by myself, but after waking up in the middle of the night with her getting sick, Mike decided someone should come with me in case she should get sick on the way down. He called his Mom this morning and she dropped all her plans to drive down with me. Luckily, Kelby didn't get sick. We drove 1 1/2 hours down to the hospital for a 5 minute process of injecting her, just to turn around and drive 1 1/2 hours home. I am very glad that Gramma Wright came down with me because once Kelby was injected, the technician wouldn't let me hold her because she is radio-active. Since I am pregnant they don't want me to hold her, change her diapers, or clean up her sicky. I don't know how long this will be, but I can't stand not holding her. Friday morning we have to be down at the hospital at 8:30 in the morning. They'll scan her then, but I am sure it will take a while before we hear any results. I am doing great. I have been working on a project that has been really fun. I am making a slip cover for a chair. It is so fun to get a project done.

Sleepy!

We are home and very happy. Kelby is doing great. She really really missed her own bed I think. She has been pretty sleepy today. So, there isn't much new to put up here, but I wanted to show you the zoo pictures. She looks so cute (if I do say so myself)! I am going to head to bed myself here in a second. Thanks so much to everyone that wrote in the guestbook! I love all the messages. I'm especially impressed that my cousin Jarad is keeping tabs on us. Love you all! Shawna PS...Here is a poem that I found that I really like: What is worry for? If worry were worthwhile Or paid a single debt, I'm sure it would be right To worry, fume, and fret. If it could make it rain Or make a person rich, Then I would lie awake Each night to toss and pitch. Then what is worry for, If worry doesn't pay? I think it's just a sign We've failed to trust and pray. ~Perry Tanksley

Going Home Later Today

We are doing good this morning. Kelby ate a ton for dinner, but got sick right afterwards. She slept good through the night, then got sick again this morning. This stuff lingers around in her system for awhile. She really does okay even after getting sick. As long as we can get her to drink lots and eat a lot of popsicles, we do fine at home. Plus, I am going to get them to send me home with that medicine that helps her not to get sick. Other than all that...I am happy because she slept good through the night. We got a three hour break from the hospital yesterday afternoon and took Kelby to the zoo. She really loved it. Her favorite animal there were the duckies. She kept saying "Kack, Kack". She did like the grizzly bears and monkeys too. It was so nice to get out. I think that she liked the fresh air. I took lots of pictures, but I can't put them online until I get home because the batteries are completely dead. So, I'll get to that later. Please keep writing on the guestbook. I know lots of people are still checking in, but it is so encourageing to know who cares about us. My favorite thing is to check the guestbook each day.

A Little More Sleep

After Kelby finally settled down last night she slept fairly well. She did wake up at 3:30 or so and throw up, but that's not the big horrible drama that you might think. This kid snaps back like a rubber band so when she throws up it upsets her while she does it but as soon as she's cleaned up she's right back to herself again. 3 mintues after she tossed her dinner she was laughing while I tickled her feet. I think being put down for a nap when she doesn't want to is more objectionable to her than throwing up. The key is not to be upset by it because when she sees that you are upset then it's not too upsetting to her. If you get upset then that's actually what upsets her, not the fact that she just threw up. It's a vicious circle once it's started. Perhaps a good overall life lesson. She tackled quite a good deal of food last night for dinner and this morning for breakfast so her appetite is still good. We think that this course of cisplatin and etopocide is actually easier on her overall than the other stuff. She seems to continue eating and drinking and keeps more of her energy overall even though this is the only stuff that has made her actually throw up. Shawna just showed up to relieve me until tomorrow morning when she'll bring Kelby home.

Just Another Day At The Hospital

Well the last 24 hours has been pretty uneventful which is good. They didn't run fluids at the same time as Kelby's chemo last night, and she made it through smiling all the way. In fact she was a little too happy. I couldn't get her to go to sleep until about 9:00 and then she kept waking up and wanting to play when she would hear me move. Finally at about 2:30am she was a little more insistent, so I gave her another pillow and propped her up on her back and she watched a whole Veggie Tales and half of the Great Adventures of Winnie the Pooh and she still wasn't asleep after that. Finally I had the nurse come and draw her blood at about 4:00 so she wouldn't be bothered after that and made her go back to bed. Today we've been hanging out and she's a little tired obviously, but happy as a clam anyway. She's going to have a test at another hospital this week to try to determine if the activity they saw on the bone scan is active healing or active cancer. Sounds like that test, called an MIBG, is pretty inconclusive most of the time though. I'll hang out here with Kelby another night and then Shawna will come down tomorrow and bring Kelby home on Monday morning. Hopefully tonight is as uneventful as the last.

Doing Good

We had a good night after her one time getting sick last night. She woke up once at 1:00 am, but didn't get sick. We just watched VeggieTales and then went back to sleep. The nurse last night was really nice and let us be, so we got a real night of sleep. I was just so thankful that she didn't get sick again. She is quite happy today. She even ate her pancakes for breakfast. We already went walking around the hospital. I think it is about time for a nap now. All is well for now. Thanks so much for your prayers because it helps so much!

Chemo Round Five

Well, here we are back at the hospital. They let us have a bigger room. It is a room for two, but as long as they don't have a full unit, we get the room to ourselves. That means that I get a real bed to sleep in! I think I could handle a lot more if I could always just have a real bed to sleep in. Kelby started this icky chemo around 5:00 pm today. It is about 9:00 now, and she just got sick on me. I hate it when she gets sick, but once she is done she usually feels so much better. She went to sleep right after. She asks me to put her to bed now. She says "ni-night" and points to the bed. Don't you all love Mike's new look on the website? The vocabulary is so cute. She knows many more words that we just need to get on video. I really love this website. It is so nice to be able to share with you all. Anyways, we are doing pretty good. We'll be here for four days of this stuff. Mike's going to take over a bit for me, so that will be nice. Well, good night for now.